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Health : Medical Research (Grantmaking/Grants Payable)

Cystinosis Research Foundation

CRF is the largest provider of grants for cystinosis research in the world, funding over 190 studies in 12 countries.

four stars

91.69

19200 Von Karman Avenue Suite 920
Irvine, CA 92612
tel: (949) 223-7610   Web Site
EIN: 32-0067668

Board Leadership
Nancy J. Stack
Chair

CEO
Nancy J. Stack
President

  Score
(out of 100)
Rating
Overall Score & Rating 91.69 four stars
  Financial 88.25 three stars
  Accountability & Transparency 100.00 four stars
This rating was published 12/01/2019 and includes data from FY2018, the most recent 990 received at that time.

The mission of the Cystinosis Research Foundation is to support bench, clinical and translational research for better treatments and a cure for cystinosis. Through our aggressively funded research agenda, the Cystinosis Research Foundation issues grants for bench and clinical research studies bi-annually in order to accelerate research progress and ensure that cystinosis research is on-going and focused on novel treatments and a cure. The Cystinosis Research Foundation is dedicated to educating the public and the medical community about cystinosis to ensure early diagnosis and proper treatment. CRF is the largest private fund provider of cystinosis research grants in the world. CRF has raised over $54.0 million for cystinosis research. It has awarded 190 multi-year grants and is funding researchers in 12 countries.

The mission of the Cystinosis Research Foundation is to support bench, clinical and translational research for better treatments and a cure for cystinosis. Through our aggressively funded research agenda, the Cystinosis Research Foundation issues grants for bench and clinical research studies bi-annually in order to accelerate research progress and ensure that cystinosis research is on-going and focused on novel treatments and a cure. The Cystinosis Research Foundation is dedicated to educating the public and the medical community about cystinosis to ensure early diagnosis and proper treatment. CRF is the largest private fund provider of cystinosis research grants in the world. CRF has raised over $54.0 million for cystinosis research. It has awarded 190 multi-year grants and is funding researchers in 12 countries.

Impact Information

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Reported Results
Total in 2018
Number of research studies funded
15
This impact information is current as of March 2020, when it was provided to us by GuideStar. At this time, Impact information published on this organization's page has no effect on its rating per our methodology.

Financial

three stars

88.25

Accountability & Transparency

four stars

100.00

This rating was published 12/01/2019 and includes data from FY2018, the most recent 990 received at that time.
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)
78.9%
  Administrative Expenses 4.3%
  Fundraising Expenses 16.6%
  Fundraising Efficiency $0.13
  Working Capital Ratio (years) 2.02
  Program Expenses Growth 10.3%
  Liabilities to Assets 25.0%
All data for Financial Performance Metrics calculations was provided by Cystinosis Research Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Cystinosis Research Foundation on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
Cystinosis Research Foundation (CA) 91.69 four stars
Citizens United for Research in Epilepsy (IL) 86.83 three stars
myFace (NY) 87.40 three stars
National Pediatric Cancer Foundation (FL) 100.00 four stars
The Buoniconti Fund to Cure Paralysis (FL) 89.38 three stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $1,459,860
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $3,109,295
   Related Organizations $0
   Government Grants $0
Total Contributions $4,569,155
   Program Service Revenue $0
Total Primary Revenue $4,569,155
   Other Revenue $86,549
TOTAL REVENUE $4,655,704
   
EXPENSES  
   Program Expenses $3,472,647
   Administrative Expenses $180,751
   Fundraising Expenses $616,935
TOTAL FUNCTIONAL EXPENSES $4,270,333
   
Payments to Affiliates $0
Excess (or Deficit) for the year $385,371
   
Net Assets $6,832,501

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Due to an error on this organization's Form 990, we are unable to display program information.

Ratings History
Cystinosis Research Foundation has received 2 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2018-06 12/01/2019 91.69 four stars
2018-06 09/03/2019 91.42 four stars
2016-12 04/01/2018 90.72 four stars
2015-12 05/01/2017 87.81 three stars
2014-12 06/01/2016 86.12 three stars
 
CN 2.0
2014-12 02/01/2016 91.46 four stars
2013-12 09/01/2015 89.19 three stars
2013-12 08/01/2015 88.98 three stars
2013-12 06/01/2015 85.34 three stars
2012-12 02/01/2014 76.38 two stars
2011-12 05/01/2013 72.24 two stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 32-0067668
Name in IRS Master File CYSTINOSIS RESEARCH FOUNDATION
NTEE Code H80
NTEE Classification Specifically Named Diseases Research
NTEE Type Medical Research
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date July, 2003
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End June
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • June, 2017
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
Compensation % of Expenses Paid to Title
Not compensated -- Nancy Stack Chair

Highly Rated

Charity Name & State Overall Score Overall Rating
Cystinosis Research Foundation (CA) 91.69 four stars
The Hope Foundation (MI) 90.35 four stars
American Foundation for Surgery of the Hand (IL) 91.26 four stars
Moffitt Cancer Center Foundation (FL) 85.57 three stars
Brain Research Foundation (IL) 87.41 three stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

Cystinosis Research Foundation
19200 Von Karman Avenue
Suite 920
Irvine, CA 92612
tel: (949) 223-7610
EIN: 32-0067668

Visit Web Site

Board Leadership

Nancy J. Stack
Chair

CEO

Nancy J. Stack
President

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